Quality of life ... is there any?

Hi everyone,

 

I was diagnosed with UC in March and recently rediagnosed with mild crohn's colitis and IBS.  I read a lot on the internet and most of it scares me so much and makes me have a ton of anxiety.  I was just wondering ... does anyone have a good quality of life with this disease?  I need to read something positive already.  Any tiny thing would do!  ;-)  I'm doing okay right now but I worry about my future ... surgeries, stronger meds than Lialda, side effects, the disease spreading to other parts of my body, not being able to take care of my son, husband and pets like I want to, not being able to leave the house because of fear of having to run to a public restroom (GROSS) and etc.  Anyway, if anyone has an uplifting story, please post it so I can see that my life isn't over before it really started.  I'm going to be 42 years old next month and I just started living a year and a half ago after taking care of my parents until they passed away.  I had only 8 great months of the good life before I got UC, now CD.  :'-(

 

Thanks,

Tami

When you come to support groups, sometimes it can be a downfall when reading a lot of scary posts, but rest assured many people with either UC or CD live very full lives, many get one episode which can even be mild and then go into remission for decades, some are not so lucky but the bottom line is many with IBD still live very full and happy lives despite having a time bomb in their gut.

:)

I had two flares in my first 4 years with Crohns. I was diagnosed at 18 and I am now 51. After those two first flares I went into remission for TWENTY years. During that time I got married, had 3 beautiful daughters, and had been working at the same job for 10 years.

I did not take any type of maintainence med during that time. Would I do it again? HECK NO!!! My remission ended in a emergency resection. So while I was forgetting about my Crohns, it didn't forget about me and was in there the whole time just doing its damage. I only take Asacol now to maintain my Crohns and it works great for me. If you can get away with one of the milder meds, I would stick with that, until/if that times comes you need something stronger. I did take 6mp for awhile and I seemed to do okay on that with little to no side effects.

Many folks have great success with the SCD or Maker's Diet. These diets aren't for me, but I live on a low residue diet and it works great. Also, you should look into a good probiotic. That will also help to keep the bacterial levels on a more even keel. I take a Lactobillus formula, but PB4 who posted earlier has had great success with Primadolphus Reuteri by Nature's Way. You might want to check that out at your local healthfood store.

Good Luck,
Gail *Nanners*

Wildgold,,quality of life is what you make it. There are people with no illness that have less quality of life than some of us. Just remember, there is no normal life,,,,,only life. Live it to the fullest.

I agree Sniper, very well put. I also take great comfort in reading these posts and knowing that you are not the only one going through this.

Similar to what all of the others have mentioned here, I wish that I could say that a future with crohn's disease is not going to be a difficult one. This disease will probably have an effect in some shape or for form on every part of your life. The best thing that you can do is learn to adapt and learn from every experience, good or bad. Do not let this disease control you. As with everything in life, there are going to be high points and low points, but you are the only one that can make every one of these situations into a positive contribution to your life and the lives of those around you. Do not become obsessed with what is going to happen to you because what you have heard or even read from posts on this board. Everyone with this disease does not always have all of the same symptoms and surgeries. Some people with crohn's and U.C. have very mild cases and live very normal lives. Others have severe cases that are home bound. Who's to say that your disease has to go the severe route? Only you will know your limitations and how you are feelings. You will learn if it is a good time to go out with friends or to stay home. Do not be afraid to go out to dinner for fear that you may have to run to the restroom. I am and have always been a very private person when it comes to bathroom talk(even with my wife), but I do not make excuses for me having to get up to go an use the restroom in the middle of a meal. Heck, if girls always seem to have to go it pairs to the bathrooms on dates(something I still will probably never understand and I am not trying to be sexist) then why should I have to be ashamed to have to go during a movie, date, dinner, or other activity. If I have to go more than once, than so be it. If the other people make mention in a negative fashion, then I probably am in the benefit of not having that association with them anymore.
There are going to be people that talk about you and say things that will probably hurt your feelings, but this just helps you distinguish who your real friends are. I used to try and fight off every comment that I heard or rumor that was mentioned, but all this did was make things worse for me emotionally and physically. I used to be ashamed of having to take all the medications that I take on a daily basis and even went the route of refusing any pain medication due to fear of looking like and addict, but that only hurt me and my wife. Live your life to the fullest that you can and do not let anyone bring your down. Do not try to compare yourself to other people that you know or even others on this board because we are all so different. There are factors with this disease that are common among us, but as you can probably see, not everyone here is going to need multiple surgeries. Some have severe arthritis, while some have none. Others have some abdominal pain while others have severe pain. I have never had a fistula, but if your read here, others have had multiple. Some are able to carry on and work, while others like myself have had to use the benefit of disability. I think that you have probably gotten my point that you cannot predict what is going to happen with your particular situation, so why stress yourself out.
One of the best things that you can do is educate yourself about this disease, but keep in mind that just like the side effects of a medications, not all of the things that you read are likely going to happen to you. Do not be afraid to educate those around about the disease. Be sure to do it in a positive way, so that you do not come across as trying to get sympathy and you do not have to give all the gory details. This will help them understand where you are coming from if you ever need to cancel with them or need some help. Also, be sure to go out and enjoy the good days that you have. If your disease does get to the point that it becomes severe, then these days may be few and you do not want to waste them. I recently was able to go out deer hunting (practically a state holiday in Utah). I was not able to hike and do the things that I used to do before I got sick, but I was able to go out and ride my 4 wheeler around the mountains and enjoy the beautiful scenery. Instead of camping in a tent like I used to, I was fortunate to borrow my parents motorhome so I had a not only a nice bathroom, but a heater and comfortable bed. Normally, the guys that I hunt with would have given me a hard time for not camping like a man, but it was amazing that all the guys that were supposed to be camping in tents ended up in the the extra beds in my motorhome. By the end of the hunt, I think that I was most popular guy in camp due to that R.V. Trials are going to come, but only you can decide if you are going to use them as stumbling stones in your path and trip, or as stepping stones and step higher.

You have already been given some great inspiration with other posts. Hard times are difficult no matter what the cause and seem like you can't get through but try to look at the good, don't dwell on the bad. This forum offers so much love & support, that in itself brings great comfort. I think most people on here have many struggles and come here seeking comfort. Many people live with IBD's and function just fine. Every case is different. I hope you will start feeling like you have a more positive outlook! Much love and laughter to you!

You know Tami, none of us is promised a future. We think in our heart we will have great times and do wonderful things but in truth , the future is justs a dream. All we really have is the here and now. So dream those dreams and reach for those great things, but remember to live life in every moment. You will find that dreams , may , come true, but the inner peace of being happy in the moment is of far greater value.

Randy, I read your whole website and I am shocked at what you have been through. I'm feeling pretty darn healthy right now! ;-) I am amazed that you still have a sense of humor. I don't think I could handle so much like you have. You are a really amazing and brave person. Cool pictures! Whoever took them must have very good guts! Thanks for sharing your website.

Tami

i think one of my friends dying from cancer this year really brought things into perspective for me,i was ablee to visit her before she died and i was shocked at how well she was taking things,and it made me believe i can go thru anything,all i ahve to is just think of her courage and strength,and unlike her i got some good news.Remission,never thort it would be possible,but i achieved it and so can all of us.